Topic: Short, infrequent bouts of shaking and an update on my Dad.

Hi everyone,

My dad came out of hospital a few weeks ago after being treated for CC with PDT treatment. The treatment went well and he has now been home for a few weeks. A week or so after the initial laser treatment of the cells, he suffered a bout of shaking lasting not very long but enough for it to concern him. One of the Doc's at the hospital didn't think it was anything too serious and felt it might have something to do with the liver. This did not happen again during my Dad's time in the hospital and so nothing else was done to look further into the matter. All the tests my Dad underwent were showing excellent progress after the initial laser treatment.

Since coming home, my Dad has experinced this same, short bout of shaking lasting about 15 minutes. This does not overly concern my Dad, but when my Mum and I see it it does worry us since we do not really know why it happens. I wonder if it has anything to do with tiredness? My Dad is not sleeping at night since coming home, despite being prescribed Diazapam last week. He can sleep for about 3 hours very easily in the afternoon and again in the evening, but can not at night. Tomorrow, someone from the Maggie's centre at Ninewells hospital is coming to see Dad for his first session of reiyke massage to try and relax him so hopefully that will have some benefit for him.

Dad did not sleep at all last night or this afternoon as he had a visitor and after he had his evening meal, he had another bout of shaking before going to his bed for a nap this evening. This makes me think that maybe this has something to do with being really tired. My Dad has always been a very deep, heavy sleeper with no problems at all in getting to sleep and this not sleeping regularly over the last few months had really hit him badly. He barely slept at all in the hospital. Has anyone experienced this or has any idea why it may happen?

As far as the PDT treatment recovery is going, on Sunday he went outside with the glasses, his hat and a glove on one hand and a paper bag with a hole in it on the other hand. The hole allowed a small part of his skin to be exposed to direct light for 15 minutes whils the rest of his body was covered.  Well after 24 hours, that part of the skin turned red like sunburn so it tells us that he is still very sensitive to direct light and that the Photofrin is still active in all his cells.  It doesnt look like very bad sunburn, but none the less, his skin still reacted to the light so he has to be fully covered up for another 2 weeks before trying the test again. The specialist warned us that this may happen after this test and that everyone reacts differently to the PDT treatment recovery so it is not really a major worry. My Dad is not downhearted about this but I think he was looking forward to going out without his gloves on.

Many thanks for taking the time to read this far and any experiences or suggestions will be very much appreciated.

Best wishes to you all.

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Short, infrequent bouts of shaking and an update on my Dad.

I don't know about the shaking, but I read today that PDT is the most effective treatment currently available for cc.  Hopefully your dad will be a success story!

3 (edited by JeffG Mon, 29 Sep 2008 14:39:09)

Re: Short, infrequent bouts of shaking and an update on my Dad.

Hi Gavin ,  Thanks for the update.  I'm sorry your Dad was not ready to venture out.  Gavin,  I really don't understand about the shaking bouts.  It could be lack of sleeping like you said.  It could also be a side effect of the photofrin in his system playing with his nervous system.  Has he tried any sleep aids?  Also, when he has these shaking bouts, is it a continuous shaky or like jerking motions off and on for a while? And does he complain of weakness.  I know I was on one chemo regimen about a year ago that caused shaking very noticable especially when eating , my hands gave me away.  Did they do labs to make sure is blood work was okay?  Possible low on potassium. Does he drink plenty of fluids to help flush the body.  Just thinking out loud Gavin to maybe get you on to something that could be causing it.  The only other thing maybe, Has he ever be tested for parkinsons?  Just Ideas Gavin , but if it continues there is a reason for it and should see the doctor about it.  Hope you solve the mystery soon.

Jeff

Take it to the Limit,One More Time! (Eagles)

Re: Short, infrequent bouts of shaking and an update on my Dad.

Hi Lisa,

Thanks for your kind words and your post. I'd never heard that of PDT, but I had read that the treatment was now being expanded and used in some other cases for other kinds of cancers and treatments as well. I will keep everyone updated as to how it goes for him.

Hi Jeff,

Thanks for your post. My Dad was given temazepam in the hospital to help him sleep, but that did not work. He was given Diazepam by his GP last week, but that does not seem to be working at night either. His Macmillian nurse said that they could look at stronger tablets, but my Dad wanted to give the Diazepam a try for a few weeks or so to see if that worked. We are getting him some relaxation cd's to listen to in his bed to see if that will help, but maybe the reikye massage tomorrow may help him relax. It just seems a bit weird the he can sleep during the day and evening, but not when he should, at night. It seems like he has turned night into day and vice versa.

As to his shaking, it seems like a continuous sort of shivering shakiness, but he does not complain of being cold at all. It is not a jerky type movement and when it happens, it does happen continuously and does not just come and go. Then when it does happen again, it does not happen for a number of days. He also does not complain of feeling weak when it does happen.

I'm not too sure what you mean by blood work exactly, but Dad had blood taken pretty much every day in the hospital and the Docs were very happy with what they saw in the results in the time after the PDT was started. Dad has always had a shaky right arm for about the last 5 years and like you mention, Parkinsons was something we had thought of. However, he spoke to his GP about it and was given tablets to try and help and they did. The way that used to look was that you would never know he had this, then he would pick up a drink of juice and you could see his hand shake as he took a drink. It wouldn't stop him doing certain things such as eating and drinking, but you could see it when he did them. Now he is unable to write or sign his name like he used to do. I'd never thought of how the photofrin might be reacting with his nervous system as you point out so many thanks for thinking out aloud as you did! Maybe it's a combination of all the drugs he has to take just now, he has to take 7 different types each day right now.

Many thanks to you both for your posts.

Best to you both.

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

5 (edited by marions Mon, 29 Sep 2008 19:00:04)

Re: Short, infrequent bouts of shaking and an update on my Dad.

Gavin...tremors or shakes have been discussed.  You might want to use the "search function" to read up on other threads describing it.  My husband, similar to your Dad would suffer from it, also.  It would come and go as you have described and no one has ever come up with an explaination as to why they occur.  It has been suggested that nerve endings are effected but, a clear definition has eluded us, so far.  Also, I found it to be helpful to smother my husband with warm blankets and let it take it's course.  And, as you have mentioned the shivering is not accompanied by an elevated temperature.  You might want to watch for this as you have probably been explained already if the temerature is accompanied by shivers you would certainly want to contact the physician. 
With Jeff's suggestions and the imput from other members hopefully, you will get to the bottom of this.
Sending tons of hugs in your direction.

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Short, infrequent bouts of shaking and an update on my Dad.

Hi Marion,

Many thanks for your advice and sharing your experinces with me. I Hadn't thought of using the search forums facility to see if there were any other threads on this, but I will do so now. Thanks also for telling me about what you and your husband did with the blankets. Since my dad never complained of being cold at the time when he shakes and shivers, I would never have thought of that. The doc's never told us of looking out for a temperature at the same time as shivers or the importance of looking out for this, so thanks also for this. Someone else on this site I think, sorry I forget who, said to watch out for signs of a fever or temperature as this could mean that the stent was becoming blocked. I sure have learned an awful lot from everyone's experiences here and from their willingness to share them with me and others! Such a great site!

Today we had a good day and a good laugh also. The reikye therapist from the Maggie's Centre in Dundee came to see my dad for the first time about his lack of sleeping. She explained what a reikye massage involved and what it might do for him, dad explained his sleep problems lately and how annoying it was for him. The therapist explained that some people may fall asleep eventually during the massage, however my dad was a bit sceptical I guess but was up for trying it. My mum and I left the room and let the therapist do what she does. 5 minutes later, she comes out of the room and says my dad was seriously asleep! When we looked in, he looked like Homer Simpson sitting in his chair snoring his head off!! My mum and I had a great laugh at this and when dad woke up he thought it was very funny! It was also good to see his sense of humour was still there.

Thanks for your support Marion and big hugs to you too.

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Short, infrequent bouts of shaking and an update on my Dad.

Gavin...I love your story and can just picture your Dad snoring his head off.  What a surprise.  So glad for you to have found something to make your Dad relax and feel good.  On to more good news coming your way.
Hugs
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Short, infrequent bouts of shaking and an update on my Dad.

Gavin,  Good one for your Dad as well. My Sister has done reikye on me years ago when I found out I had recurrence and put me to sleep as well.  Now that you mentioned Your Dad already had a shake when drinking water I would think out loud again and say surely could be parkinsons and the medication and treatments have caused progression.  Some would call this drug induced.  Not sleeping at night is an issue for many with CC. Some reasons.  change in habits, lack of exercise, your metabolism changes, pain, for some reason think they have to be awake sub-conciously speaking.

I wish you all the best.
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Short, infrequent bouts of shaking and an update on my Dad.

Gavin, my father shakes also.  When holding anything in his hands.  I feel so bad for him trying to watch him eat.  He's too proud to have anyone help.  This is my strong father who always took care of me and I always knew he was there for me.  It's difficult to watch.  I've not seen an explanation for this either.  Dad did not have parkinsons or anything like that before this disease.

I had a much needed chuckle regarding your reikye induced sleeping.  Dad sure could use anything right now to help him sleep.

Keep us poste.  Best wishes

Re: Short, infrequent bouts of shaking and an update on my Dad.

Hi all,

Thanks again for all of your support, it really does mean so very much to me to hear from you all!

Marion,

Many many many thanks to you for suggesting that I look into using the search function on the site. I was searching the site last night for posts relating to PDT and came across a post from early 2006. The thread was regarding PDT in the Uk and someone posted that there were only 2 trials for this in the UK, one by a surgeon in London and the other by a Mr Tait at Ninewells Hospital in Dundee. My Dad was treated at Ninewells and his specialist is Mr Tait! The treament Mr Tait and his team gave my dad was superb, he was always there for us and was more than happy to spend lots of time with us all. I always felt that my dad was in good hands with his specialist and after reading that Mr Tait was one of only 2 surgeons carrying out PDT trials in the UK, I feel that dad really is in the best possible hands. I told my mum and dad today about this, and they were both very very happy to hear this. They also both felt very happy and comfortable with being treated by Mr Tait, but now that they know that he was carrying out trials and research, they feel even better about the care my dad is getting.

Thank you very much Marion and huge hugs to you!

Jeff,

Thanks again for thinking out aloud again re the parkinsons and how his meds may have progressed it if he does have it. I know nothing about parkinsons or the symptoms but I think I will have to look into this further. I'm a bit wary of mentioning this to my dad right now as I'm sure you can imagine, he has a lot of other things to deal with right now. His GP did say to him previously that he did not think parkinsons was an issue then, but as you say, his meds may have progressed it.

This not sleeping at night is really hitting my dad badly. He is used to a very regular 8 hours a night every night when he was working. He never worked shifts like I did so his body clock was very regular, unlike mine as I worked all manner of different shifts week in week out. He's only ever had 1 job and worked for 48 years for the same company doing the same job 8 to 5 every day every week. I think you might be right regarding the change in habits, excercise and metabolism brought about by this horrendous illness.

Rank,

Thanks for your support. I can totally relate to what you feel when you see your dad shake. It's never nice to see a loved one like this and like your dad, my dad is a very proud man. I will do anything and everything in my power to help my dad and make his life as easy and as comfortable as possible. Sometimes though, I try to take a step back and let dad try certain things as I do not always want to just jump in and ask if he needs help with that. He is a proud man and I repect that so much.

He had an incident in the hospital when he had to sign his name to a form for something. He really couldn't do it and his arm was shaking really badly and this made him a bit panicky. The harder he tried, the harder it became to sign his name. I told him to stop as I could see how agitated he was becoming, but he carried on. Sometimes he really is a stubborn old goat! We made a joke about it afterwards and he was okay. I've mentioned in previous posts that dad has a great sense of humour and I think this helps him deal with certain situations.

I'm glad that the reikye situation gave you a much needed chuckle, it did the same to my mum and I also! I sure hope that your dad gets some sleep soon. Have you tried a few drops of lavender oil on his pillow? Our Macmillan nurse suggested this to my dad and I got some for him this week.

Many many thanks to you all and the best of wishes to you and your families.

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Short, infrequent bouts of shaking and an update on my Dad.

Gavin

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Short, infrequent bouts of shaking and an update on my Dad.

Gavin

I loved the Homer Simpson story - we all need a good laugh, don't we? 

My dad also has the shakes, but I really never gave it much thought until I read your post.  I just assumed it was the pneumonia he was fighting.  His right hand tremor is especially bad and it is very difficult to watch him try to eat.  The aides are good about helping, but we try to plan our visits around meal times so we can all help.